Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Why Now


Stubborn red head

Recommended Posts

Stubborn red head Apprentice

When I was 16, I had been in and out of hospitals for a number of reasons for two years. My mother and a team of doctors felt that it was worth a shot on the gluten-free diet I tried it felt good the first few weeks then got to the point that no mater how many Vitamins I took I was always tired. I worked at Wendy's and didn't eat there because of CC. I would still come home and sleep 12-14 hours wake up an hour or so before I had to be at work, only to come straight home and go right back to bed. We went back to the doctor and my pediatrician recommended that I go back on gluten, to see if I got my energy back. Of course my mother was outraged and got my medical records right then I never seen him again. I ended up moving to my grandparents and went back on gluten. I felt like a normal person again. My grade shot through the roof normally a C student I was bringing home a 4.0, working 20-30 hours a weeks and I was involved in two clubs at my high school.

Now its complete opposite. I was sleeping anywhere from 9-13 hours and couldn't hardly concentrate. Now gluten-free and 26 I feel like I am 16 again. I have energy to burn, I am more productive at work than ever, and I am sleeping 6-8 hours a night waking up refreshed... Whats the difference. Why now, what has changed in my body that makes such a difference.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Bubba's Mom Enthusiast

When I was 16, I had been in and out of hospitals for a number of reasons for two years. My mother and a team of doctors felt that it was worth a shot on the gluten-free diet I tried it felt good the first few weeks then got to the point that no mater how many Vitamins I took I was always tired. I worked at Wendy's and didn't eat there because of CC. I would still come home and sleep 12-14 hours wake up an hour or so before I had to be at work, only to come straight home and go right back to bed. We went back to the doctor and my pediatrician recommended that I go back on gluten, to see if I got my energy back. Of course my mother was outraged and got my medical records right then I never seen him again. I ended up moving to my grandparents and went back on gluten. I felt like a normal person again. My grade shot through the roof normally a C student I was bringing home a 4.0, working 20-30 hours a weeks and I was involved in two clubs at my high school.

Now its complete opposite. I was sleeping anywhere from 9-13 hours and couldn't hardly concentrate. Now gluten-free and 26 I feel like I am 16 again. I have energy to burn, I am more productive at work than ever, and I am sleeping 6-8 hours a night waking up refreshed... Whats the difference. Why now, what has changed in my body that makes such a difference.

I don't know if this is the case for you..but I had spells where my Celiac symptoms went into remission for a time.

This was many years before I was DXed with Celiac. I'd have spells where I was sleepy/exhausted no matter how much I slept, and then out of the blue I'd feel just fine.

I'd have spells where I had a lot of digestive issues and then they'd just clear up for a while too.

I know others have had these periods of "remission" too.

Victoria6102 Contributor

Before I was diagnosed, I would be sick for 3 months and then feel ok for maybe a week( those were the best weeks of my life, that was when I remembered what it felt like to feel normal) but then sure enough the next couple weeks passed and BOOM back to being sick. That went on for five years before I was diagnosed. I can't eI plain why that happens to a lot of us though :P

Cara in Boston Enthusiast

I'm pretty sure I read somewhere that your symptoms can seemingly disappear for months or years, but the damage is still being done (internally) and you are still at a higher risk of developing associated autoimmune disorders. I was reading specifically about teenagers/young adults. People diagnosed as kids, then they cheat (must be hard to be gluten-free as a teen?) and feel fine so they conclude they must have been misdiagnosed. If you are still eating a regular diet now, perhaps you should consider blood tests and biopsy to confirm or rule out celiac disease?

Cara

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      High TTG-IgG and Normal TTG-IgA

    2. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      7

      Am I nuts?

    3. - lalan45 replied to GlorietaKaro's topic in Super Sensitive People
      7

      Am I nuts?

    4. - knitty kitty commented on Scott Adams's article in Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease
      2

      Could Gluten and Alzheimer’s Be Linked? New Research Uncovers Surprising Protein Parallels (+Video)

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,838
    • Most Online (within 30 mins)
      7,748

    Pepper Loo
    Newest Member
    Pepper Loo
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
    • lalan45
      You’re not crazy—some people have severe neurological and physical reactions to gluten, not just digestive issues. While testing can be tricky without eating gluten, documenting symptoms and seeing a specialist familiar with atypical celiac or gluten-related disorders can help. Your reactions are real, and it’s valid to be cautious.
    • SamAlvi
      Anti TTG (IgA) 2.430 U/mL Anti TTG (IgG) 288.2 U/mL
    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.